Parent

The other day I went to the funeral of my sister-in-law's mother, an 80 year old woman who had suffered from Altzheimer's disease for several years. She had shut down almost completely about a month ago, no longer eating or speaking, and by the time death came it was a bit of a relief.

At the luncheon after the funeral, a brother of the deceased approached me and introduced himself. He was a dentist and had heard that I was a neonatologist. He told me of a son that he and his wife had 50 years ago who was born at "eight months" along. The baby had breathing problems and died at the age of one day, and the dentist wanted to know if there had been any progress made in the treatment of such babies and diseases.

I told him that yes, tremendous advances had been made, and that a baby like his if born today would likely be a relatively easy case. I told him about the advances made with mechanical ventilation of babies in the late 1960's and 1970's, and of the advent of widespread use of artificial surfactant in the early 1990's.

Although he seemed pleased to hear about the advances, he had a somewhat wistful expression on his face, and I said to him,"You never forget about your baby, do you?" He seemed relieved to have the sentiment acknowledged and started talking more about his dead baby boy. He told me that his son just couldn't seem to catch his breath, and he was reminded of it when he saw his Altzheimer's impaired sister take her last breaths. After our conversation he thanked me and we went our separate ways.

Fifty years ago a small baby lived for one day, and every single day since then his father must have thought of him. There is, I think, no stronger attachment than that of a parent for his or her child.

Judgements

I just finished reading the book The Memory Keeper's Daughter, a novel about an orthopedic surgeon and his family. The story begins with the orthopedic surgeon having to deliver his own wife of twins because a blizzard makes it impossible for them to get to the hospital. The first twin is a fine boy, but the second twin he recognizes as having Down syndrome and tells a nurse to take her to an institution. Instead, the nurse takes her to another town and raises her as her own child.

There are a few unrealistic things in the book - the idea of an orthopedic surgeon making an instant, certain diagnosis of Down syndrome is a bit far fetched; usually we pediatricians are looking at a baby and trying to decide whether the child really has Down syndrome or not, and wait for the chromosomes to confirm it - but overall it was quite good. It gave some glimpses into what it might be like to raise a child with Down syndrome, showing both some of the heartaches and triumphs. The part I found most striking , though, is when the twin brother, who previously has felt sorry for his sister because she has Down syndrome, comes to the realization that he need not pity her because she is quite happy and content with her life - perhaps even more so than he is.

It reminded me of a study done in Canada looking at very premature NICU survivors who were now teens. Although they had some challenges in life, both mental and physical, their feeling of self worth was actually greater than that of a control group of "normal" teenagers. Happiness did not depend on how smart or well coordinated you were.

I like that lesson - happiness does not depend on intelligence - but I wonder how far we can extend it. Certainly there are people with mental retardation, either from Down syndrome or other causes, who lead happy, fulfilling lives. But is there not a limit to how impaired one can be and still have a happy life? I know that some parents of children with Trisomy 18, kids who are much more impaired than kids with Down syndrome, believe that their children are happy, and although it seems to me that Trisomy 18 children have to suffer a fair amount in life, who I am to contradict that? What about more impaired children, though? Kids with Trisomy 13 are usually even more impaired than Trisomy 18 kids. I remember one from my residency who had lived unusually long, to the age of 13 years, and he always seemed miserable.

I don't have the answer to this, but I'm going to be very careful when making value judgements about what lives are worth living.

Communication

I was called to go STAT to the delivery room. Unfortunately they didn't tell me what delivery room, but I found it anyway. It turned out they had brought mom to the c-section room for a "double set up", where they could do a c-section right away if needed. The baby was three minutes old when I arrived. When they brought mom back to the c-section room, they called everyone but the neonatal team.

Fortunately the baby was doing well. He was a 25 weeker but was breathing fairly well on his own. We brought him to the NICU and put him on nasal CPAP -think of it as blowing air and oxygen into the baby with a little bit of pressure - and he looked fine and dandy.

Before I left the delivery room I briefly showed the baby to mom and dad and told them I would talk to them in more detail once we got the baby settled in the NICU. I again saw them briefly when they went through the NICU on the way to mom's room, and I told them I would be out in a few minutes, once mom got settled in her room, to go over everything with them. When I got to mom's room, she was there with a friend, but no dad. "Is the dad here?" I asked. No, he had gone to the store.

I sighed a little; I guess dad didn't think it too important to hear about the baby. So I went over everything with mom: the approximately 75% chance of survival; the possibility of needing a mechanical ventilator; the need for an IV for likely 4 to 5 weeks (maybe less if he does really well;) the possibility of bleeding into the brain; the increased chance, versus if he had been born full term, of a neurological problem; and several other things, including a pitch to have her pump her breasts to feed the baby.

All in all, it was the kind of talk I wish the father had been there for, because he should hear this stuff and because I really didn't want to go over it all again. Sometimes the father comes later and wants to hear it; I try to tell them, but having done it once, I know I condense it the second time. It can get a little frustrating, especially when you make an effort to get parents there at the same time.

Sometimes I've talked to mothers at the bedside or in their room, and after I go through a long spiel they say, "Can you tell that to my husband , too? He's just outside in the waiting room." Now you tell me?

Before I left the mother of the 25 weeker I asked her if she had a name picked out yet. She said yes, he would be a junior. I waited, thinking she would tell me the name, since I didn't know dad's name, but nothing more was forthcoming. Finally I asked and she told me.

I sighed again. Some days communication is just tougher than other days.

P. S. Grand Rounds is up at Healthline.com and Pediatric Grand Rounds is up at Pediatrics Info.

Sue

If a nurse or doctor sees medical malpractice occur in her NICU, should she tell the parents to sue?

I think of a case that happened about 18 years ago. A baby was born very prematurely at 23 to 24 weeks gestation and weighed very little, about 500 grams. I remember that the survival statistics at that time showed about a 10% chance of survival for this unfortunate child. We got the baby through the first three weeks of life, but then, in spite of our best efforts, she developed an infection and died from infection related renal failure. It was a not atypical way for such a premature baby to live and die.

One of the NICU nurses thought she detected malpractice and told the parents to sue. Sure enough, one of our town's most prominent malpractice attorneys came sniffing around and deposed a few of us neonatologists. After he found, appropriately, that no malpractice had occured, he and the hospital settled for a small amount of money, (about $10,000, I think) enough to cover the attorney's expenses up to that point, but small enough that it wasn't worth the hospital's time to fight it further. There was no admission of guilt by the neonatologists or the hospital.

I think the nurse told the parents to sue because the physician chief of that NICU had recently been demoted and a new chief brought in. Some of the nurses remained loyal to the old chief and were happy to keep the pot stirred up. I think the nurse really thought malpractice had occured, but she was biased and also not knowledgeable enough to determine whether malpractice had occured. I mean, it's not likely malpractice when a baby with a 90% chance of dying actually dies. Her telling the parents to sue did no one any good, except the attorneys involved. It just sustained the parents' grief, rather than helping them deal with the sad loss of their child.

I don't know whether a health care worker should tell the parents to sue if they see malpractice occur or not, but I do know this: You had better be sure you know what you're talking about, or else you'll look like a jackass and lose some friends and your job, which is what happened - appropriately - to the nurse in this case.

Tagged

I have been tagged by the good Doctor Flea, to participate in the seven song meme, to reveal "seven songs I am into now." It's kind of good to be tagged, because one, it's nice to know people are thinking of you, and two, it means I don't have to come up with another idea for today's post. I would like to take this opportunity, though, to ask Flea a couple of questions. Why does he call pediatricians fleas? And since we neonatologists take care of the smallest pediatric patients, does that make us mites? Anyway, here goes:

1. Lose Again, by Karla Bonoff. Karla Bonoff wrote many of the songs that Linda Ronstadt made into hits, and she does a nice, spare version of this one on her greatest hits CD.

2. Avalon, by Roxy Music. I recently purchased the CD 'The Best of Roxy Music." The first 8 songs are very good, the remaining ones rot.

3. From Boulder to Birmingham, by Emmy Lou Harris. This is just a very pretty song.

4. Tell Me On a Sunday, from the eponymous musical written by Andrew Lloyd Webber, as sung by Sarah Brightman. Perhaps the best song ever.

5. It's a Hard Rain Gonna Fall. I recently heard a CD with Joan Baez doing this Dylan song, and on the last verse she imitates his style of singing. It's pretty good.

6. Silver Lining, written by David Gray, as performed by Bonnie Raitt. Very good. Check it out.

7. Hey Ya, by Outkast. I've only heard this song once, when I was visiting my daughter at her college a couple of years ago, but I've been fascinated by it and it's catch phrase "Shake it like a Polaroid picture" ever since. I guess it's time to go to iTunes and ante up 99 cents to buy it.

I have to stop after only seven? Oh well, here are seven people to tag: (If you want to participate, fine, if you don't I won't be offended.)

1. Ex Utero of Tales From the Womb
2. Clark Bartram of Unintelligent Design
3. Dream Mom
4. PaedsRN
5. Fat Doctor
6. Barbados Butterfly
7. Kim of Emergiblog

Reasons

At an OB case conference they were presenting the case of a pregnant mother who had spina bifida herself. They pointed out that they had done a detailed ultrasound in the second trimester to see whether the baby she was carrying had spina bifida when my neonatal colleague asked, "If the baby was found to have spina bifida, would she have aborted it?"

It's a fascinating question. Would a mother with a congenital anomaly abort her baby if the baby had the same congenital anomaly? It raises the issue of why parents abort babies who have problems such as spina bifida, Trisomy 21, or other birth defects. I remember attending a prenatal session with a couple whose baby had an anomaly - I can't remember exactly what, but I think it was spina bifida - and they were discussing with the physicians their options, which included terminating the pregnancy. They were very open and talked about possible reasons for aborting the baby. They said that if they terminated the pregnancy it would not be because they didn't want to bother with a defective child, but because they didn't want the child to suffer in life.

Although I remained non- judgemental at the prenatal session, I didn't quite buy what they were saying. For the sake of the baby they were aborting him or her? I suspect the real reason they and most parents pregnant with anomalous children terminate the pregnancy is for themselves, so they don't have to deal with the problem. Why, I suspect their reasoning goes, should they have to care for a child with a defect when they don't have to? Maybe I'm being too hard on parents - and I would certainly hate to ever have to be in their position - but I don't think so.

And even if they were terminating the child for the child's sake, to spare him or her from suffering, is that what the child would have wanted? Do children with spina bifida suffer so much that they wish they had never been born? Perhaps it varies from child to child, but I'm guessing the answer is usually no.

Nobody knew the answer to my colleague's question at the conference. Fortunately, the fetus in question had no birth defects.

Rounds

Should parents be present when doctors do rounds in the NICU? That question came up in the comments section a couple of posts ago. Traditionally, NICU's haved kicked parents out during rounds, but some NICU's now have them stay in.

I was a bit wary of the idea when we started allowing parents in on rounds at another hospital about fifteen years ago, but I soon found that I liked it- a lot. It was a good way for parents to hear what was going on with their baby. It was a good way for parents to hear us going through a lot of data about their baby, to hear that some of the problems were quite complex. It was good, I think, for them to see that not everything is black and white, and what sometimes we struggled with decisions we weren't sure about.

Some doctors, though, aren't wild about having parents present. Doctors with less experience, like the residents, might feel a little insecure having parents hear them present on rounds. Some doctors might not like it that we can't use derogatory terms like "gork," but the truth is , we shouldn't be using terms like that even when parents aren't around. Some might worry, with some legitimacy, about patient confidentiality, but that can usually be maintained by speaking in measured tones away from the direction of people who shouldn't hear about a given patient. And the real truth is, there is hardly any patient confidentiality in the NICU anyway. All the parents tell each other about their babies' problems in the waiting room or hallway.

What bugs me is that I can't get the nurses to do report with the parents in the NICU. Twice a day, everyday, from 7 to 7:30, the nurses kick all the visitors out for their report. It's so archaic, so twentieth century. Sometimes parents get a little ticked off because they have to wait outside for half an hour. What the nurses don't seem to understand is that the information they give each other in report belongs, ultimately, not to the nurses, but to the babies and their parents. I've brought this up at least half a dozen times with nursing management, but to no avail. I think they fear a revolt by the nurses if they let the parents in.

Fallacious

I was watching Grey's Anatomy about a week ago and one of the story lines was about a woman pregnant with her seventh baby who was about to undergo a cesarean section and who didn't want to have any more babies. Normally, she would be a good candidate for a tubal ligation, but her husband was a staunch Catholic and refused to go against that church's teaching about using no birth control (except for the rhythm method, which isn't really birth control.) Because of that, the woman would not sign consent for tubal ligation, but she really wanted the obstetrican to do it anyway. The OB felt sorry for her and during the cesarean section "bovied" (cauterized) the Fallopian tubes - she made up some excuse like there was bleeding by the tubes - and rendered the mother sterile. The assisting resident was offended by this - remember, they had no consent to block the Fallopian tubes - and told the woman's husband, who threatened a lawsuit against the hospital, and so on. (I think I've got the story line right; I only saw part of the show.)

The episode reminded me of a conversation I had long ago with an older obstetrician who was a Catholic himself. He told me stories of obstetricians in the 1960's and 70's doing hysterectomies for birth control in Catholic women who wouldn't have their tubes tied because of the church's prohibition against it. The OB would fabricate a reason for the hysterectomy - say the woman had excessive bleeding, for example - do the hysterectomy and voila, faster than you can say"unethical behavior", the mother has birth control but doesn't have to tell anyone, including her Catholic friends or priest, the real reason for the hysterectomy.

I'm not writing this to debate the correctness or not of the Catholic church's teaching that birth control is wrong. I happen to think it's wrong, but a church has the right in our country to believe what they want. But I am bothered that obstetricians would actually do that. It's not only medically unethical, it's not even correct from a moral or Christian standpoint. In order to do the hysterectomy, the OB would have to, one, lie about the indication for surgery, and two, put the woman's life at unnecssary risk by doing an operation that was more than was needed to effect birth control. In other words, lying and causing unnecessary harm were okay; just don't go against the church's teaching re birth control.

I don't doubt that this happened. I've known Catholics and some can be very picky about doing what the church teaches. It's as if the teachings of the church trump common sense and morality. I don't think, though, that it happens much anymore, mainly because most U.S. Catholics ignore the church's teaching about birth control. I wonder, though, if it still happens once in awhile, or if it happens in other countries where perhaps some Catholics are more adherent to their church's teachings. Happening even once is too many times.

Relationship

In a comment on my previous post, ex utero said something that I completely agree with. Discussing meeting parents, the good doctor said "I also try and talk to parents whenever I see them at the bedside..." I try to do the same thing, even if their baby is doing fine and there's nothing exciting going on. You can always find something to say, like their baby is growing well, or we're going to start nipple feeding the baby soon, or how handsome their kid is. Many parents don't really know what to ask, so I like to give an idea of our plans for the coming days, even if it is just to feed the little guy and make him grow.

It's a small thing, but parents really seem to appreciate it. Regrettably, I didn't realize this at the beginning of my neonatal career. I didn't much enjoy talking to parents then, although I'm not sure why. Now I find it very enjoyable to get to know the parents and have them like you and trust you. I also find that if you have to call parents to give them bad news, it goes much better if you've developed a relationship with them and they not only know who you are when you call them, they actually have confidence in you.

I think, though, that some parents don't realize that building a relationship is a two way street. Although the main onus of developing a good relationship with parents is on the physician, the parents will have a better relationship if they do their part, too. One of the most important things for parents to do is to actually show up to visit sometimes. It's especially helpful if they show up at a time when the doctors can talk to them. I like it when parents are there during rounds, so they can hear the same information we do about their baby and hear the plan. If they can't be there then, it's nice if they can be there sometime during the day so I can chat with them when I wander through the unit in the afternoon.

Some parents , of course, can't make it during the day, because of work or transportation issues, and only come in the evening. The unfortunate truth is that those parents just don't get the same attention that daytime parents get. They have to rely on the night duty physician, as opposed to the physician doing the daily rounds, to talk to them. Some night physicians do it well, some do not. Here parents can take some of the initiative in building a relationship. I think it's great when a parent who I haven't seen much calls to say they just want an update on their baby. Unfortunately, that rarely happens. (Why? Are we doctors that intimidating? Or don't they care about their babies? [I think they do.] Or are they just not aware they can do such a thing?)

As I think about it, I realize there can be all kinds of nuances in parent - physician relationships. Maybe we can talk about it more later, but for now I've got to go cook supper.

Responsibility

I called the mother to get permission to transfer her baby to a hospital with pediatric cardiac surgeons. At first she didn't want to give permission over the phone, preferring to wait until she came to the hospital. She said she was at the car wash and would then come right to the hospital. I pressed her though, preferring to get permission now and be certain of it rather than waiting for her to come in, and mother consented. I was glad I obtained phone consent because it was five hours before mother came to the hospital.

How does coming "right to the hospital" turn into arriving five hours later? I don't know, but such behavior is not uncommon for our patient population. People will say they're coming in to talk to us and then not show up. No shows are also common at our hospital's clinics. Last week I wrote about my conversation with a woman carrying a baby with Trisomy 18. She was one hour late for our appointment, and when we finally met she neither apologized for nor even mentioned her tardiness.

When I started dealing with patients in medical school, I was surprised at how irresponsible their behavior was. Non-compliance with treatment recommendations and missed appointments were common. Coming from a pretty straight Midwestern family - one where you showed up when you said you would, and one where you would take your medicine if your doctor told you to - I certainly hadn't expected that. Now I practically plan on people missing their appointments.

What's the reason for such behavior? I don't know. I suppose if you don't have reliable transportion, a common problem for my patients, it could be difficult to get where you're supposed to be on time. But I think it's more than that. I think life is looser for some in my patient population. Responsibilities just aren't that important.

Which may be why generation after generation remain poor and uneducated, with lousy or no jobs.

Abuse

A pediatrician friend telephoned me. "Do you remember the Doe twins, 31 weekers born a couple months ago who did well?" I vaguely remembered them. "Well, I just admitted one of them on the ward, and the other one is in theICU with head injuries and multiple fractures of varying ages." Apparently the mother, who has about eight kids, admitted to being rough with the twin, and later admitted to sitting on him. The twin my pediatrician friend took care of was in the hospital just for protection and to get x-rayed. I don't know exactly what the head injuries were on the twin in the ICU, but he is expected to have lasting neurological damage.

Multiple fractures of varying ages means someone - the mother in this case - abused the child multiple times, and abused him hard. It takes a lot of force to break a child's bones, even an infant's. He also had retinal hemorrhages, bleeding in the back layer of the eye, indicating that he was shaken.

I've written before about shaken babies, and said at that time that I thought many child abusers were not necessarily evil but rather very much like us. They loved their kids, but they lost it sometimes with them when they were frustrated instead of coping some other way. Now, though, I'm not so sure I'm willing to give this mom the benefit of the doubt. Losing your temper and abusing your kid one time is bad enough, but something that we can understand, even though we don't condone it. But how can you say you love a child you abuse multiple times? If you really loved him, you would get some help for yourself to keep from doing it again.

I don't know what's going to happen to this mother. Her other kids will almost certainly be taken away from her - maybe they already have been - and I wonder if she'll be arrested. Even though I'm ticked off at her, I still feel sorry for her and hope she gets some help. But I don't ever want her to get custody of her kids again.

P.S. This afternoon a radiologist told me about a 7 month old who showed up in the emergency room with 16 fractures, including a complete fracture of the femur. Can you imagine how hard someone had to beat that baby to cause so many fractures? It's sickening.

Eighteen

When I had phoned her to set up a meeting I told her she could bring the father of the baby or any other support person she wanted. She had told me "The only support I need is the man upstairs," referring, I think, to God and not the upstairs tenant.

She was 36 weeks pregnant, carrying a baby with Trisomy 18, diagnosed by chromosome analysis of amniotic fluid. Her midwife had asked me to speak with her. The midwife said mom didn't believe the diagnosis. She claimed that in a previous pregnancy they told her the baby had Down syndrome and he had turned out fine, with no chromosome problem.

I began our conversation by trying to find out what mom knew, to see what her understanding was. She talked as if she had some denial of the problem, but as we talked further I could tell she really was understanding. I told her the bad news about kids with trisomy 18, that they have multiple birth defects, that 90% die by age one year, that the survivors are severely developmentally disabled. I told her that many people think it okay to not do heroic treatment with these kids, but to let nature take its course, allowing them to die.

Mom was very nice, but she wasn't ready to give up on her child. She wants the baby resuscitated, to see her in the flesh, to see the evidence, I guess, of the Trisomy 18. She said it would then be in God's hands, but let me know she might be open to letting nature take its course.

What a horrible situation for a mother to be in. At a time when she should be thrilled with the impending birth of a child, when she can feel it kicking, living inside her, she has to come to grips with the fact that this is far from a healthy baby, that there will be far from the joy she would have, should have, with a normal baby. Instead of reading brochures about parenting or cribs, she has to read information I gave her about the bad things her child has and support groups to help her cope. Once again, I am thankful for my own healthy children. Once again, I am amazed at the hard, hard things people encounter in life. She'll be on my mind the next few weeks.

Dysfunctional

I started reading the book Running with Scissors by Augusten Burroughs, a former best seller and soon to be a major motion picture. It's a memoir that tells of his unhappy childhood and dysfunctional family. It's funny in parts but also very sad, and it makes me wonder: what is it about dysfunctional families that makes people want to read about them or watch movies about them? I mean, this is hardly the first best seller about troubled years growing up. Angela's Ashes, a huge hit a few years ago, told of a childhood so miserable, with alcoholic and neglectful parents, that I had to quit reading it about a third of the way through. Memoirs of a Geisha was another one that told of such unspeakable cruelty to a child that I almost stopped reading it, but the writing was so beautiful I kept on and finished it. Most of us probably remember, too, Mommy Dearest, the Joan Crawford tale. I know that not every book can be uplifting, but why does cruelty to kids make for such popular reading?

Another thing in this book that strikes me is its portrayal of a woman with OCD, obsessive compulsive disorder. She is so afraid of dirt that she washes and washes her hands, to the point where her hands are red and dry and cracked. This part of the book takes place many years ago, before the development of some of the modern anti-depressant and anti-obsessive drugs such as SSRI's (Prozac, etc.) and is a reminder of how truly horrible mental illness can be. I remember case reports in my medical school psychiatry readings about people who would wash their hands an entire afternoon, unable to stop. Can you imagine what that must be like, wanting to stop doing something repetitively but unable to do so because of some weird inner compulsion that won't let you quit? It would drive you, well, crazy.

I can only imagine what it must have been like with no medications for the more severe mental illnesses such as schizophrenia. Even with meds nowadays we still don't always do so well with them; with no meds it must have been a nightmare. No wonder Freud and his contemporaries had to come up with such detailed theories of the psyche; they were powerless to treat mental illness by any other way but psychotherapy. Modern psychiatric medicine isn't perfect, but it has undoubtedly helped many people.

P.S. If you want to read an excellent post about what it means to be a mother of a special needs child, read The Surreal Life by Dreammom.

Frustration

I wasn't going to write about this again, at least not now, but I can't help it, because it's too frustrating. Last week I saw a 24 year old mother having her fifth child and ninth pregnancy, and today I talked to a 23 year old mother who just had her third baby after her ninth pregnancy. Nine pregnancies by age 23? What is wrong with these people? Why can't they use birth control? Sure, mistakes or ignorance can occur and result in one or two pregnancies, but by then a person should be able to figure it out.

The 23 year old I talked to today who just had her third baby has had two previous children, one ectopic pregnancy, 2 miscarriages, and 3 induced abortions. This baby was born prematurely at 34 weeks gestation. The risk of delivering prematurely is increased significantly when a woman has had greater than or equal to 2 induced abortions. In other words, it is possible that if this woman had used birth control to prevent unwanted pregnancies instead of using abortions to end unwanted pregnancies, this baby might have been born at term.

I don't want to get into the whole abortion thing, at least not today, but I'm sure that some of my readers think it is okay for women to have abortions and some do not. Regardless of where we stand on the abortion issue, though, I hope we can all agree that abortion should not be used as the primary method of birth control. There are far easier and safer ways to do that.

The bleeding heart liberal side of me wants to feel sorry for these moms and try to understand why they don't use birth control properly, but the frustrated, responsible side of me just wants to chew them out. For crying out loud, take care of yourself, and act like a human being instead of an animal.

I feel better now. I probably won't address the birth control issue with mom, because I know the OB's hit it pretty hard, but if it comes up in conversation I will give it a plug. But I don't think it will make much difference.